Martha, Carol, Marling (and a warm welcome to ya, Marling), et all...

In defense of sons (of which I have none), my two daughters are 31 and 28,
with Sandy, the oldest, living about 2 1/2 hours from my Los Angeles home.
Both are lovely, talented, and immensely successful business persons earning
substantial incomes, and both are engaged to be married.  They consciously
have known about my having PD for about 12 to 14 or the 21 years which I've
lived with it.

I am far from shy or reticent (members of PD list start to grin and nod their
heads, and Ernie falls out of his chair in hysterical paroxysms of laughter),
and was, prior to my 10/24/94 unilateral pallidotomy, unable to get either of
my daughter to EVER sit down with me and discuss anything having to do with my
illness.

Mind you, we've always been very close, and they've freely discussed
everything from their/my financial matters, to their intimate love life with
me, and I've been pretty darn open with them on all but the latter topic, tho
I'd feel free to discuss THAT with them too, if there WAS an "intimate love
life to talk about!" <grin>

With that personal history revealed, let me state that while she won't bring
up the topic of PD or more specifically MY PD, my oldest daughter will LISTEN
and respond to the topic if I bring it up.  She WILL voice thoughts and
opinions tho briefly.  Out of the blue she informed me not too long ago that
she has opened a bank account solely with the thought that in some far away
future time, I'll be dependent upon my daughters for sustenance, and she wants
to be prepared for that moment.  I was dumbfounded that she even thought of
that.

Jamie, the younger of the two girls, lives about 10 minutes away from me.
She's thoughtful and caring if I have a cold (which I very rarely have, thank
goodness!) or the like - offers to make market and drugstore runs, or even
drops by with ice cream or other yummies. If I have a sleepless night (and
those I DO have often), she always responds in the same caring way.

HOWEVER .... Until I had the pallidotomy she simply refused to discuss
anything having to do with PD and/or her mother having it.  She DID mention
going on a trip to the No. Californian wine country and meeting an elderly
vintner there who had PD, and said the disease didn't stop HIM from leading a
perfectly "normal" life, so why would it stop ME from doing the same?  That
old man and the 10 minute conversation she had with him has become the
standard by which she's judged MY disease.

Further, shortly after the pallidotomy, when I was going thru physical and
emotional changes (for the better!), it dawned on me as I watched her question
Dr. Iacono (Loma Linda Med. Center's neurosurgeon I went to for the surgery,
who assisted Stanford University's Dr.Gary Heit in performing the operation)
about the symptoms and feelings I'd mentioned having, I realized that she
didn't BELIEVE ME when I mentioned various symptoms (scary and bad ones to
just little aggravating ones).  They became valid ONLY after a medical
professional said they were.

I have told Jamie and Sandy that within the next 2 months I expect them both
to present themselves at my home for a discussion on my physical condition,
what I anticipate happening over the next few years, etc., Instead of being
nice about it and backingdown if they were unresponsive, as I've always been
in the past when introducing the topic of PD to them, I've been very firm in
saying this meeting IS going to take place.  And I've stressed to Jamie that
what I SAY I feel within my own body is exactly WHAT I feel - no arguments or
discussions with doctors are necessary to validate that OR me!

WHEW!   I seem to have some anger and frustration here which I'm going to have
to address, too!  Thanks to you all for "listening."  I 'preciate it.

Barb Mallut
"Lil_Honey" on the PD Chat
[log in to unmask]

----------
From:   PARKINSN: Parkinson's Disease - Information Exchange Network on behalf
of (Martha Rohrer)
Sent:   Friday, December 27, 1996 2:44 PM
To:     Multiple recipients of list PARKINSN
Subject:        Re: Caregivers and sons

I will have to join Carol and Marling in their observations that sons do not
seem to be able to discuss a parent's Parkinson problems. It does not seem
to be a matter of youth and emotional inexperience, since our two sons are
at the leading edge of the baby boomer generation. My husband and I have
recognized that it appears to be a cultural matter, rather than something
involving male genetics or birth order. The fact is that their father's
rapidly deteriorating condition is distressing them terribly, and they grew
up, like many males of their age, keeping their emotions under control in
public. I keep them informed of new developments in their dad's slide
downward into total disability. And I have begun to talk to them about the
options that we will have to face up to in the future, perhaps this coming
year. They listen in silence, but they hear me, and the pain they feel is
clearly written on their faces.

When children live their lives away from their childhood nest, and only see
their parents during brief visits, the full impact of the problems of late
stage PD is less clear. Our younger son is spending a week with us over the
holidays and is getting the full impact of the changes in his dad's
condition since he saw him last. Our first-born son lives nearby, and the
changes have been absorbed more gently, like aging. The impacts are
different, but equally painful. Much more important than words is their
obvious desire to help with whatever needs to be done, now, or in that
tomorrow none of us is eager to talk about.

Martha (CG for Neal, 76/11)